Week EightSunday, January 19, 2003
Weight: 3 lbs. 8 oz. (1588 grams)
Feedings: 24 cc of Breast Milk (27 cal)
BM: GreenThere isn't much to tell today.
Although she did have another whopper of a diaper. Bailey has been doing so well the past few days! Her doctor gave
her a follow up heart echo to check the fluids in her heart and he said
that the heart looked good. He mentioned that he thought the heart
was a little cramped for space in Bailey's tiny chest, but not to worry.
He said that her heart had formed normally and that as soon as she grew
a little more the heart would expand to it's full size and shape.
This is a picture of the ultrasound machine used to give Bailey her
echocardiogram.

Like I have mentioned before. Bailey loves her pacifier.
The one she loves the most is hollow in the middle. This means you
can either look down the middle and see her little tongue at work, or you
can put your finger inside and feel her tongue working. In the first
picture I am holding the pacifier with my finger inside. It is still
very comforting to Bailey to have her arms and legs held close to her
body. In the second picture, I fell asleep while holding Bailey
still. She fell asleep too.

Monday,
January 20, 2003(Click
here to go to Father's
thoughts)
Weight: 3 lbs. 9 oz. (1620 grams)
Feedings: 24 cc of Breast Milk (27 cal)
BM: GreenBailey's last line was taken out
today. Bailey has no IV's!One of Bailey's doctors called
this morning to give me an update on Bailey. Once again, when I
saw Utah Valley come up on the caller ID my heart sank. I was glad
to hear that the reason for calling was just a routine update. He
told me that Bailey's x-rays still look better than they did a week ago,
but that she wasn't progressing very quickly. He also told me that
her x-rays showed chronic lung disease. This is just a fancy way
of saying she has scar tissue in her lungs. The scar tissue was
caused by the ventilators, but this is a small price to pay for her
life. I asked what the long term affects of the lung disease would
be and the doctor told me that there is really no way to tell at this
point. The lungs are unique in that they continue to produce new
lung tissue for the first few years of a persons' life. As such,
there is a good chance Bailey's body will compensate for the damaged
tissue and she will never be affected by the lung disease. On the
other hand, there could be more severe outcomes. I guess the
answers to many of our questions won't come for many years. We
will continue to pray for the best.The doctor did tell me that
Bailey would be more susceptible to diseases like RSV and conditions
such as asthma.Bailey no longer receives
Aldactazide, Sodium Chloride, and Potassium Chloride. She no
longer needs any of these medications.Bailey's oxygen has been at 35%
all day today. The nurses and doctors continue to turn down the
oxygen and ventilator pressures. She has stopped swinging so much
and can recover on her own when her oxygen saturation drops. For a
couple of hours in the evening Bailey's oxygen actually stayed at 28%.Bailey is so much more alert
now. She looks at people. She responds to environmental
stimulus. And unfortunately, she is more aware of all the sensors,
tubes, and her condition. She became quite agitated a couple of
times today. As a result she was given Valium twice today.Tuesday, January 21, 2003
Weight: 3 lbs. 85 oz. (1600 grams)
Feedings: 26 cc of Breast Milk (30 cal)
BM: YellowBailey had a good day today.
According to her respiratory therapist her x-ray looked good. Her
lungs looked clearer and better inflated, but she did have quite a bit
of gas in her gut. Unfortunately, Bailey extubated (pulled her
breathing tube out) herself this afternoon at 3:00. This happened
just minutes after mom had left from her afternoon visit. It's
good thing mom wasn't there to experience the extubation.Although no one likes it when babies
extubate themselves, it was a god test of how Bailey would fair without
the ventilator. The verdict... she still needs the vent.
This is the second time she has done this.As we were leaving for the night,
Bailey's nurse told us that she would probably be moved back to the VIP
ventilator sometime during the night. This was good news because
it meant that Bailey was progressing and that we would be able to hold
her again.Bailey's poop is yellow again.
This is a good sign that she has worked all the infection out of her
body.

Wednesday, January 22, 2003
Weight: 3 lbs. 9 oz. (1626 grams)
Feedings: 26 cc of Breast Milk (30 cal)
BM: Yellow
Ab. Girth: 29 cmBailey's poop continues to be yellow.
I will not mention her BMs again unless there is a change.Bailey was moved back to a VIP vent
today. As can be seen in the first picture below, the VIP has
flexible tubing allowing us to hold our daughter. There wasn't a VIP
Gold available to put her on so she will be moved to one as soon as it
becomes available. The Gold has a few extra options that will help
Bailey's lungs.Bailey's CO2 was a little higher today
than it has been, and her percentage of O2 needed has also been a little
higher than it was on the HFOV. However, Bailey's pressure
settings on the VIP were much lower than they were the first time she
was on this vent. The lower the pressure
means that Bailey's lungs are getting strong enough to do more work on
their own.The second picture shown below shows
how Bailey really likes to sleep with her hands up by her face.
The nurse explained to me that this is how babies comfort themselves.

Thursday, January 23, 2003
Weight: 3 lbs. 9.5 oz. (1637 grams)
Feedings: 26 cc of Breast Milk (30 cal)As you can see from the picture below,
I got to hold Bailey today. I love giving her her bink. She
really likes sucking on it.The respiratory therapist tried
switching some settings on the VIP today. He changed the settings
so that instead of giving Bailey a set pressure ever time she breaths,
it gives here a set volume of air. This allows her lungs to do a
little more work. Unfortunately, Bailey's CO2 climbed and they had
to switch her back. They hoped that by the end of the day they
would have a VIP Gold available that would allow them to give a set
volume with pressure support (as combination of the two settings
discussed above).Stacey held her today and also gave her
her second bath in a tub. I missed the tub bath because I was
painting Bailey's room in our condo (we are trying to get the house
already for her to come home). This is why there are no
pictures of the bath. Mom always forgets tot take the camera to
the hospital.When Stacey held her today, Bailey
sucked on her finger for the first time.

Friday, January 24, 2003
Weight: ????
Feedings: 26 cc of Breast Milk (30 cal)
Ab. Girth: 29 cmBailey is now on a VIP Gold ventilator.They weighed Bailey on a different
scale today and it showed that she weighed 1735 grams. No one
believed the scale so the nurses said they would resume using the mobile
scale tomorrow that they had been using for the past week.Bailey didn't have the greatest day
today. Her chest x-ray didn't look good and they had to go up
on her pressure settings. They also gave her a blood infusion.
Hopefully we will have better news tomorrow.Saturday, January 25, 2003
Weight: 3 lbs. 9 oz. (1624 grams)
Feedings: 26 cc of Breast Milk (30 cal)
Head: 29.5 cmBailey had a great day today! Her
pressure settings look good. Her x-ray looks good. And she has
been getting 35% oxygen and only slightly swinging on her saturation.As you can see from the pictures below,
I was finally there for a tub bath. Bailey loved it. She
just sat there as if she were being pampered at her own personal day
spa. She also decided to get rid of some of that gas in her gut.
In other words, she provided a constant little stream of bubbles from
her southern end.After her bath I clipped her finger
nails for the first time (the third picture below). I felt bad
because I cut her left index fingernail a little too close and she
started to bleed. The nurses are not allowed to cut the babies nails for
this very reason. I wouldn't have cut them if it wasn't necessary.
For the past week she has taken up the hobby of scratching her eyes.After cutting her nails, I got to hold
her for a long time. She even sucked on my finger for a little
while.